7 yr old newly diagnosed Imuran or Remicade

[Emily's mom]

Hello,
My daughter, Emily (7 yrs old) was diagnosed with Cronh's just this month. It all started out with type A flu on December 21 then snowballed into consistent fevers lasting nearly three months, numerous blood tests, X-rays and CT scans we finally found her illness. My husband and I were shocked. Not knowing much about the disease we are trying to learn as much as we can to determine her treatment options. Trying to understand the disease is one thing, but trying to make an educated decision on treatment options is overwhelming to say the least, as you are all aware of. My husband and I are wavering back and fourth on treatment options, Imuran is one and Remicade is the other. Obliviously, the side effects are scary and this a a very tough decision. I realize we have no other choice and we have to get her into remission to stop further inflammation damage and to get her growing.

I've found the Crohn's Forum to be very informative for data points. Please feel free to give feedback or any helpful info. I wish all your children the best!

-J

 

[Jmrogers4]

:welcome:
Welcome to the forum Emily's mom. I'm sorry you have had to find your way here.
It's very hard making these choices for someone you would protect with your life and trying to decide which is best given the small chance of major side effects for either one.
My son was started on Imuran when he was diagnosed 4 years ago and ended up taking it for about 2 years. It wasn't quite enough although it took us a long time to figure that out as his only continued symptom was lack of growth and weight gain. He stayed the same weight for 3 years! He was on LDN for about 1 1/2 year and gained weight and grew a couple of inches but ended up flaring which has recently led us to remicade which has been a night and day difference for us.
However Imuran works very well for many including my husband who has been in remission for about 10 years on it and it was his magic medicine.
Imuran does take some time to become theraputic about 2-3 months and is generally started along with something else like prednisone or entreanal nutrition to get things under control while giving the Imuran a chance to work.
There are a couple of different methods in dealing with IBD a bottom up or a top down approach. A bottom up would be you start with the mildest medication and work up till you find what works (this has been a traditional approach) or there have been quite a few studies recently on top down. Hitting it hard with a biologic and knocking the CD on it's butt. I believe remission rates after a year have been a little higher with this approach. I'll look for the study or MLP if you're around and have it handy?
We are here for any questions, support, venting. Please keep us posted on Emily and hope that whatever direction you decide it gets her quickly to long lasting remission

 

[Patricia56]

Welcome to the Forum. I'm sorry your child is sick but it sounds like her parents are right on the ball which can only be good for everyone.

It is a very steep learning curve - just like with any other serious disease - because you have to make treatment decisions while you feel totally ignorant and scared. The choice you are being offered is typical these days because there is a growing body of research that suggests that hitting the disease hard early is better in the long run. That would be the remicade choice. My son was diagnosed 8 years ago and the step up approach (Imuran in your case) was the only treatment option offered us. Even that was very scary and many people find the biologics like remicade scarier.

However, there is now a pretty long history of using these meds with children (about 15 years for remicade, longer for imuran) and the sky has not fallen, so to speak.

There has been some concern about cancer and one particular cancer (HSTCL) has shown up as a cluster in adolescents (mostly boys). There hasn't been an FDA safety update to this since 2011 and at that time it's my understanding that it wasn't clear if this cluster is/was a fluke and whether it might be associated primarily with remicade or with imuran/AZA/6-MP or with combined use. There was one analysis that found the possibility of HSTCL was 1:45,000 with combined use. Actually skin cancer is emerging as the largest cancer risk in people on immune suppressors.

Liver damage is another area of concern that is often overlooked I think. But careful and appropriate monitoring with labs can identify this early and medication changes like lowering the dose or changing meds will usually take care of the problem quickly.

Some of the most recent research includes the finding that 1 year outcomes are better in children with inflammatory luminal CD started on antiTNF alpha (biologics) within 3 months of diagnosis than children started on immunomodulators or no immunomodulators within 3 months of diagnosis.

Early bioligic use produced best height scores at 1 year and highest % in remission (85% vs. 60%).

You can read the summary at this link:
http://www.globalacademycme.com/clic...T&ocid=1690525

FWIW if it were me, knowing what I know today, I would do remicade.

If she is undernourished I would also consider trying EEN with her and/or supplementing her diet with EN. I have to run now but I know someone else will come along and explain EEN to you.

You must do what you feel is best for your family. Regardless of your decisions know that everyone here will offer support and caring no matter what choices you make.

 

[Emily's mom]

Jmrogers-Jacqui,
Thank you so much for the warm welcome.
I find it amazing that your husband and son both have Crohn's. You must be one strong lady!

The remicade is working well for your son? How does he feel during/after treatments? How does he do in school? Emily has missed three months of school just because of her fever lasting non-stop for three months, not knowing why? She'll probably miss more until we feel comfortable sending her back. We have a tutor come to our home three days per week.

I'm happy your husband has been in remission for so long. Does he have and your husband have any special diets?

Thanks for your help! I will keep you posted on Emily's treatment and her journey. I will continue to follow you.

Best wishes to you, and your guys!

 

[Cupkatemom]

My daughter started Imuran on Dec. 31st. We are nearing the end of the 3 month mark and have had no problems with Imuran. In the past six weeks, she gained 4 lbs and 1/2 inch - so she is finally beginning to grow again. The doctor believes it is due to the Imuran. We did reach a point in Jan. where we had to consider Remicade if there was no improvement within a 2 week mark. We took predisone for 5 days and then we were fine. Our doctor really wanted Imuran to work for her - thankfully, it did. I do not know much about Remicade, but I will say the convenience of an oral medicine is nice (if it works).

 

[Mehita]

My son was dx'd when he was eight years old and our GI follows the bottom up approach that has been mentioned, so he tried 5ASA first, then Azathiprine (the sister drug to Imuran) before having to move on to Remicade. Aza simply wasn't strong enough for him.

You might want to check with your insurance comapny too. Some require that you follow a bottom up approach for coverage. Of course you can alway appeal, but that can take time, meanwhile your kiddo is feeling miserable.

Once you find a med that works for her and you see her improving and feeling well again, the side effects and worry subsides. This first year is the hardest... but we're here for you!

 

[Emily's mom]

Patricia56-
You are correct! I feel totally ignorant as before my child's diagnosis knew very little about the disease. Your information is appreciated. I have read about EEN and that was our first choice, however when we realized that she would also have to be on medication we decided we wouldn't put her through that at this point. However, she is drinking the polymeric formula drinks to reinsure that she is meeting her nutritional daily value along with food.

How old is your son and how is he doing? I see he is taking remicade. How are you?
I know this is something that we'll learn as we go and we have to take one day at a time.

I appreciate your time and knowledge.

-J

 

[my little penguin]

DS was dx at age 7 as well.
WE also started at the bottom ( 5-ASA's, then 6-mp , then MTX ) with all of these he never truly got better it was a very very long year to watch him suffer.
Then he started remicade- It was a wonder drug and worked well for him for over 8 months before he had an allergic reaction ( my kiddo has lots of severe allergies to all things ( animals, pollens, foods , drugs etc..) so not shocking.
He has been on HUmira ( another TNF-alpha blocker) since for about a year now .
Ocne on remicade/humira he was able to go back to competitive swimming and not look back.
We also added EEN ( peptamen jr) with EN ( formula peptamen jr +food) since the beginning.
He grew 6 inches and gained over 30 lbs after not gaining at all for over 2 years.

There are risks but both meds have risks.
Remicade /humira was the drug that gave us our kiddo back just wish we had started it sooner.

 

[DustyKat]

Hi and Welcome. :bigwave:

You have already been given fab advice so nothing to add there. So just a couple of questions:

Where is your daughter’s Crohn’s located?

What are her symptoms?

Has initial treatment been commenced, as in Prednisone and/or Enteral Nutrition?

The use of immunosuppressives and/or biologics as maintenance medication is for three reasons…disease control, steroid sparing and to reduce the need for surgery. The treatment ladder, as described by Jacqui and Patricia, is what you have been presented with. As has been stated, the top down approach (Remicade) has better long term outcomes than the step up approach (Imuran) and the reason is that by getting into remission in the fastest possible time it reduces continued damage being done. If there is not sustained outcomes from the step up approach then as each treatment fails the inflammation remains and so increases the chances of complications, long term damage and surgery.

Unfortunately it is often the case when IBD is diagnosed at a younger age that it has a more severe presentation and is more difficult to treat than adult onset.

It surely is the most difficult of decisions to make and a highly individual one. Take all aspects of your daughter’s clinical picture into consideration and always remain objective about outcomes. There are no wrong or right answers here mum, just what is right at the time for your daughter. Some people hit on the right treatment straight up and some don’t. I surely hope you do but if you don’t it is no failure on your part, it is the disease.

If there are two pieces of advice I can give from the outset then it is this:

1. Don’t ever become so enamoured by one treatment (by treatment I mean medication, diet, anything) that you fail to see what is in front of you.

2. You are in confusing, heartbreaking and dark days just now :ghug: and the light at the end of the tunnel seems so ridiculously out of reach. But it is there and you will reach it. Things will never quite be the same again but you find a new normal and the light and laughter return to be bigger and better than ever.

Dusty. xxx

 

[Emily's mom]

Wow! Thank you so much for everyone's input, DustyKat, my little penguin, Mehita, CupKateMom. My husband and I feel like we've been living in a bubble. It's good to have a place to talk with people who are experiencing similar experiences. You all sound like great moms!

DustyKat,
Emily's symptoms have been loose stools (sometimes with signs of bloody mucus), FEVER wakes in morning fever free by noon it creeps up. She has headaches, complains about her lower rib area hurting, some tummy aches, and her bottom is sore. It's been Groundhog Day for three months now.

Emily's infected areas are in the colon.

My little penguin- That is awesome growth and weight gain for your son! I can't wait to get Emily feeling well. She is such a happy, bubbly little girl. Her teacher once said, " Her enthusiasm is contagious."

Thanks again to all of you!

 

[DustyKat]

My children were older when diagnosed, 14 and 17 respectively, and they have followed the more traditional path of adult onset that for many is ileal involvement.

Your lass does fit the profile of younger onset Crohn’s which normally affects the colon. I would look closely to those that have children diagnosed prior to about age 12. That is not to say that I, or others with older children at diagnosis, can’t give you some stunning advice! :wink: :lol: but you will likely find very similar stories in the younger cohort so seek them out and read their stories. Many will have age when diagnosed in their signature (the signature will only appear on their first post of each new page).

Also have a look through the stickied threads at the top of this forum’s main page. Treatment Clubs will give you further information and experiences on how others have fared:

Treatment Clubs

Dusty. xxx

 

[Emily's mom]

DustyKat- thank you so much for your guidance.

 

[Jmrogers4]

The remicade is working well for your son? How does he feel during/after treatments? How does he do in school? Emily has missed three months of school just because of her fever lasting non-stop for three months, not knowing why? She'll probably miss more until we feel comfortable sending her back. We have a tutor come to our home three days per week.

I'm happy your husband has been in remission for so long. Does he have and your husband have any special diets?

Jack has had remicade treatments in the morning and I did not send him back to school after treatment only because we are still fairly new to the infusions and I would rather keep my eye on him afterwards. He could probably go as he is usually full of energy afterwards and feels fantastic although he just pretty much crashes about 8pm. He gets up and goes to school the next day with no issues. The last infusion we did in the afternoon so he was able to attend a couple of periods in the morning.
We don't follow any special diet other than avoiding nuts, seeds, popcorn. My husband doesn't do a whole lot of fried foods or tomato sauces as they upset his stomach. We tried SCD, Paleo, Gluten free with Jack. The SCD and Paleo we had a hard time with because he has such a hard time getting enough calories and gaining/maintaining weight and he would not enough of anything legal to meet his nutritional requirements. Gluten Free we stayed with the longest but when we added gluten back in it didn't make any difference but when we started he was in a flare and when we added gluten back in he was in remission so maybe it helps while he is flaring?

 

[Emily's mom]

Jmrogers- Thank you! I hope he continues to do well!

 

[Twiggy930]

Hi Emily's Mom

So sorry to hear of your daughter's diagnosis. It is a heartbreaking thing to have to go through. My son was diagnosed at the age of 10. He was started on prednisone and azathioprine immediately. We switched to EEN when it became apparent that prednisone wasn't doing the trick. My son's inflammation was under control pretty quickly with the combo of prednisone and EEN (although he continued to have abdominal pain). The azathioprine took a while to fully work (about 4 months) and we added a med called sulfasalazine to control some arthritis that he developed on top of it all. My son was left with chronic abdominal pain that we struggled to control for many months. We finally got a handle on the abdominal pain with a change in diet by following a FODMAP diet.

We really had no choice but to follow a step up approach as that is what our medical system requires doctors to follow. I at times desperately wanted to switch him to Remicade and wondered if a step down approach might be better. In the end things worked out well and I have to say that I will be happy if azathioprine continues to work for him.

For me one of the things that bothered me about the thought of my son going on Remicade was that it would necessitate a trip to the hospital every 6 weeks or so. At the moment this wouldn't be a problem for us but I worried that it would restrict him later in life. The restrictions that I worried about were mostly in terms of travelling or living abroad. Neither are things I am sure he will want to do but I was very upset by the thought that he might be restricted in what he could do as a young adult if he had to have an infusion at the hospital every few weeks. I like the freedom that the oral medication allows but don't get me wrong if it stopped working I'd jump on the Remicade bus as quick as I could.

All these decisions would be much easier with a crystal ball in hand.

 

[Clash]

My son went straight to remicade and the difference was dramatic. Symptom wise, stomach pain, multiple bms it still stops that in its tracks.

But it along with MTX(methotrexate) hasn't been enough to stop the progression of the disease, apparently. A recent ct scan showed progression and he recently had a flare.
I think I fell prey to what Dusty mentioned above, I was enamored by the remicade because it did give my kid his life back, took away the pain and fatifgue but I overlooked his lack of weight gain, his lack of endurance and just allowed myself to think this was his normal, skinny and tires easily. Had he not started
Flaring then things may have went on as they were.

I'm not sure what the future holds for us as far as treatment but if given the option all over again I would've still went straight to remicade and C says he would've made that same choice.

Remicade was scary but I am way more afraid of what this disease is doing and that these meds didn't work.

It is such an individual decision and I feel there is no wrong decision, you do the best you can with all the info you have and if it has to be changed then you just keep moving forward always in hopes of a long deep stable remission with the med that finally brings your child relief.

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear of your little one's dx. My son was dx'd last March at age 8. Similar situation as yours... A flu and then the fevers... Our GI does the step-up approach, usually choosing Imuran 1st, and reserving Remicade. Every GI is different though. My son was unable to tolerate Imuran and is now in Methotrexate injections. I wish you and your daughter well, I know these decisions are not easy.

 

[Emily's mom]

Thank you, Crohnskidmom. How is your son doing now? How did the Imuran affect your son, if you don't mind me asking?

-j

 

[CrohnsKidMom]

Hi Emily's Mom; My son had an adverse reaction to Imuran almost right away. I would give the Imuran to him at bedtime and within 2 hours of taking the med, he would get a fever. He would sustain a fever of 104 or 105 F through the night and it would be gone by morning. Scary! And no sleep happening for my son or me! Bloodwork that was done showed elevated liver enzymes, but the dr thought that would come down once my son's system got used to the Imuran. The dr didn't actually think the Imuran was causing the fevers, but there were no other new symptoms, so he gave me permission to stop the med, and bingo! the fevers were immediately gone. My son is doing very well on methotrexate-thank you for asking. He's not fond of the needles, but is getting used to them. I hope you have good success with whichever med you chose. I know Imuran works for many people...

 

[crohniekid]

Hi,
My son (9) was just diagnosed at the end of February and we are in the same boat! We bought ourselves some time to make a decision by going the EEN route (R drinks kids essentials 1.5) for 2 weeks before deciding to try Imuran. We are now 4 weeks into the EEN and 2 weeks into the Imuran. I cannot honestly say if I think that R is getting better...I waffle all the time asking myself if we made the right decision. R has very mild symptoms that don't seem to be getting 'better' and he has a few new ones (dizziness, cramping, rectal pain)...but those could also be from the iron supplements he's taking OR the Imuran (which I've read can take a few weeks for the body to adjust to). We have our second GI appointment on Wednesday since our diagnosis...
I hope that whatever you decide your daughter starts to feel better soon!!!! Everyone keeps saying that the first year is the hardest so I keep telling myself that it will 'only get better'. Right now it feels a bit like I'm walking on a minefield...

 

[Emily's mom]

Hi Crohniekid,

I'm sorry to hear about your son. I have to admit before my daughter's diagnosis I knew very little about Crohn's. I still don't feel like I know enough. I hope R starts feeling better. It's so hard to see your child in pain.My doctor said since Emily has been sick for three months it could take that long on meds to get her feeling like her old self.
Emily complains about lower chest pain, lower tummy pain, leg cramps and she gets head aches.

Hang in there because I bet the meds will kick in soon!

Thanks for your response and keep us posted!

-j